What is the work?

It is over, so I won’t win a book, but I’m going to go buy his book anyway as I really like the way he is thinking about work and connections… and it gave me a chance to process some of what I was thinking about over the last weeks and last week in particular. The question he’s asking is “How do you define the word ‘work.'”

I was in Toronto taking a refresher course in a planning method we use a lot for folks with disabilities, their families, groups we are part of, projects and assorted other things. The space was held by Lynda Kahn and Jack Pearpoint of Inclusion Press. The processes are called PATH and MAPs and, as Jack said to me at one point, there are 25 ways to skin a cat and they are all related and part of the same conversation about person centredness and working together. In B.C. my facilitation partner Shelley Nessman and I, and our friend David Wetherow, are known as the West Coast experts in this process – so, in a way, it was a bit odd to go somewhere and sit in a circle of learners who are new to it: a huge wonderful luxury.

I kept saying to Shelley (and Jack and Lynda), “What a gift to be part of the circle instead of in the centre of it” and then I would say “What does that mean?” It has been a gift to be part of so many circles of people planning together in a new way but in this circle I was a learner. So this is one of my perennial questions – how do I stay a learner in all I do? At the opposite end of this question is the idea of a professional with all the answers and, particularly in my field where success has been so problematic, this idea of knowing the answers is a dead end. It’s not that we don’t know some good things that are helpful but for the most part people we care about are disconnected, under and un-employed and many of them are unknown in their communities – the research demonstrating that the more we support and serve them, the less known they are.

PATH was a transformational response to the history of planning for folks with disabilities, in which a big table of professionals would gather with big stacks of papers that the person could not read, and sometimes the family or a family member or sometimes but not often the actual person with the disability, would sit hunched on one side of the table and listen to the litany of the history of their problems and challenges and to what they had done wrong since the last planning meeting, to create a new plan to address what was wrong with them in the coming year or so. PATH gave people a new vision – a picture – of what person centredness and planning could look like.

What if, said Jack and his late wife Marsha Forrest, their friends John O’Brien and Judith Snow, we formulate a new way of planning that is based on talking to the person about their dreams? What if we have that conversation in a way that is comfortable and hospitable and use pictures to make sure that all of us, even if we cannot read and are afraid of these stacks of papers that pose as our histories, are on the same page? So they developed a template to be facilitated by amateur facilitators with just a little training – the scene is set with food, music, hospitality; the PATH is drawn in colorful graphics – whatever the person says is their dreams goes up on a big sheet of paper; only what the person agrees with goes up. It is an approach based on giftedness – what is the person good at, what do they love, what have those of us who care about them noticed is important and valued by their community? What connects them? Increasingly, with our friend David Wetherow, it is this question of connection that matters most – who do they share this gift with? How could they better connect? How might the connection compel more connections, more success, more of what makes their hearts, and the hearts of those who care about them, sing.

So in Toronto we did a brief workshop on the idea of introduction and invitation in these situations – You Had Me At Hello! and then we went to a workshop by an amazing woman from India, Malina Chib, who, with her mother and some allies, has changed the way that disability is considered there – not least by writing and publishing a book called With One Little Finger. Her book is about many things, but not least of these is how to be loving and assertive when you are surrounded by those who priorise your vulnerability. I think we cannot imagine this, although meeting her and listening to her and reading her book gives us a new sense of it. What is it like to say, my dream is X and have someone respond with all the reasons why that is not possible for you? Again and again, and, again and again, to respond that you have thought this through, you have figured it out, you are about to embark… And with every movement forward those who believe in you – your family and allies and friends – take what they’ve listened to, take your questions, and they begin to build supports and services that change the lives of all the people in your country. Children who were assumed to not be able to go to school, go to school. People who were assumed to have nothing to offer, get jobs. The person who is assumed to be inarticulate comes to the front of the room and begins to speak and everyone sits quietly, listening to a new voice that has a new perspective on who we are and what we might do.

And this idea of who we are and what we might do has been my passion for the last several years in my field – and it’s really about all the questions. It is about what Charles Eisenstein has recently written, in his book, The More Beautiful World Our Hearts Know Is Possible (Sacred Activism):

“What is that hurting thing, that takes the form of cynicism, despair, or hate? Left unhealed, can we hope that any future we create won’t reflect that wound back at us? How many revolutionaries have recreated, in their own organizations and countries, the very institutions of oppression they sought to overthrow?”

People come to supports for folks with disabilities out of a sense of social justice and excitement about new voices and new ideas about community, but are often stifled in their work with organizations and governments who base their work on risk aversiveness. Those they support are not like Malina Chib, constantly lovingly returning to an ongoing conversation about possibility and potential as she travels to London and through India and gets one degree and then another and another and moves to the front of the room, surrounded by those who she has convinced. Perhaps they cannot talk, or they have like a friend of mine, been “wrung dry” by a system which even at its best, she says, requires her to explain her dream to seven layers of a hierarchy. “I know, when it gets to you, you will help me make it happen when you understand what I am saying. But it’s tiresome and I am 70 now.” One of the disasters of community living is that it attracts those who yearn for change and turns them into automatons who have no space to ask better questions. As Pontefract says, in another blog entry on the changing values of leadership and the correlation to quality of life for all of us, “If employees are enthusiastic, committed, passionate, and generally into their work, isn’t it time leaders of any stripe, at any step in the hierarchy chain, acted with more humility and were less parochial?”

One of the changes to the PATH process since we learned it, which we went to Toronto to learn more about, is the idea of a scratch pad – a big sheet of paper placed at the side of the PATH plan on which as someone talks, you draw their dreams, but only as placeholders and tentative ideas – and when it is time you ask them, what is the central image here that best expresses your dreams? Of all of these drawings, what would you like me to transfer to the PATH plan? You hold the space, the question, the negative capability that Keats talked about:

. . . Negative Capability, that is, when a man is capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason – . . . from being incapable of remaining content with half-knowledge . . . [which] overcomes every other consideration, or rather obliterates all consideration . . .

One might think that the scratch pad idea is only about becoming certain of what the person dreams and wants, but this is reductive. The scratch pad is also a holding space – it sends a clear message that it is okay to generate just the best questions, the greater wonderings, without being pinned down. It says, our work here is to support you, not, our job here is to figure out which box you will fit into. It is, in this new conversation about education I have been excited to be part of, “rhizomatic.”

Tomorrow Shelley and I are teaching this slightly changed process for the first time, and very excited about it. The workshop is full, but the next one is in September and there are spaces left for those who wonder and want to be part of a new conversation. The very idea of PATH is a signal that we are being called not to define what work is, but to wonder about that.

Published by Aaron

Director of Research, Training and Development, Spectrum Society for Community Living. As well as being responsible for in-house training and research on best practices in the field of helping people with disabilities organize their supports, I support self advocacy groups, contract to provide training and workshops to other agencies and groups and facilitate inclusive research groups. I am the author/illustrator of three books, co-editor of a new anthology for 2012, and co-editor of Spectrum Press. My passion is creating networks of best practice leaders in our field to share person-centred alternatives in how people with disabilities can be facilitated to live lives where their gifts are necessary components in their communities. I am currently half way through a Masters degree in Interdisciplinary studies, focusing on Equity and Adult Education, and particularly on how people with intellectual disabilities may be supported in participatory leadership groups.
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